hi eveyone, my name is ray from PA. i am new to this site. im really glad ive found this site because there are people out there that know how i am feeling and going through. ive had als symptoms beginning in sept. of 2002, probably earlier, but thats what i recall. i was 28 at the time and was newly married. my life was great at that point, beautiful wife, built my own home, great job, plenty of money, then wam a slap in the face when i heard the words lou gehrigs disease from the neurologist. first thought i had was disbelief, im too young for this, apparently not, then came the anger. so angry at my parents for giving me horrible genes, but over time and through research that there is no known specific cause for als i couldnt blame them. that day was aug. 4th 2003 i was officially diagnosed. 3 yr. anniversary tomorrow. after a couple of weeks of feeling sorry for myself i would have no more. i wouldnt allow the disease to affect my mind in the way of depression. i even continued my job for as long as i could physically. i think i earned alot of respect from my co-workers. it feels good telling my story. ill finish later because im getting tiredc of typing with my pencil in my mouth. talk to you later your friend ray
4 yrs. with als
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BWk
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Ray,
I think there are electronic devices[lasers, switches or something] to use for typing if one can't use their fingers, maybe you already know about these aids ,though they can be slow I've heard. Sorry to hear your so young with this illness.The youngest I've heard with als was 3 and the oldest 98 [in the U.S.] Barry
I think there are electronic devices[lasers, switches or something] to use for typing if one can't use their fingers, maybe you already know about these aids ,though they can be slow I've heard. Sorry to hear your so young with this illness.The youngest I've heard with als was 3 and the oldest 98 [in the U.S.] Barry
Al
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Hi Ray. Welcome but sorry you have to be here. There are webcam's that pick up eye movement and a dot they put on your glasses that control the cursor and the mouse clcks. Talk to your Occupational Therapist and ALSA or MDA will even help with getting the devices. I'm going on Aug. 21 to the ALS Clinic to see about them myself. AL.
lunarruna
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hands free mouse
Hi Ray, thanks for sharing your story...we all get 'therapy' and a sense of community from these posts. Look forward to hearing more from you.
Regarding the hands-free mouse technology that Al mentions, we got a SmartNav Infra-red set-up for my husband--just ordered off internet and it was a snap to attach to his laptop (USB port)...then he has a dot on his glasses (or hat or forhead) that moves the mouse around. Thats at http://www.naturalpoint.com/ I think it was around $200?
He also downloadeded a 'click and type' keyboard that is onscreen so he can type using the headpointer. That was at http://www.sofotex.com/Click-N-Type-virtual-keyboard-download_L349.html
It is hard to picture at first but neat technology. I had to set the stuff up and it was really a snap--had been worried it would be complicated but is quite simple.
Cheers, Beth (CALS to Shannon diagnoseded 8/2004 at age 40)
Hi Ray, thanks for sharing your story...we all get 'therapy' and a sense of community from these posts. Look forward to hearing more from you.
Regarding the hands-free mouse technology that Al mentions, we got a SmartNav Infra-red set-up for my husband--just ordered off internet and it was a snap to attach to his laptop (USB port)...then he has a dot on his glasses (or hat or forhead) that moves the mouse around. Thats at http://www.naturalpoint.com/ I think it was around $200?
He also downloadeded a 'click and type' keyboard that is onscreen so he can type using the headpointer. That was at http://www.sofotex.com/Click-N-Type-virtual-keyboard-download_L349.html
It is hard to picture at first but neat technology. I had to set the stuff up and it was really a snap--had been worried it would be complicated but is quite simple.
Cheers, Beth (CALS to Shannon diagnoseded 8/2004 at age 40)
Hi Ray,
I am glad to read your post. I just signed on today. Are you still able to use your hands or do you hold the pencil in your teeth? I am asking because I use a head mouse as i have no movement hardly left in my hands. It is from Origin instruments down in the US and our provincial ALS Society has loaned it to me and loaned software to use it .
I am from Calgary, Alberta, Canada. I was diagnosed only last September and the confirming diagnosed was in October and already i am down 55lbs to 115 and no use of hands and unable to walk. I can weight bear once someone has hauled me up. i can not stand on my own.
mostly i was wanting to say i hear you and provide info on the head mouse.
PATRICIA
I am glad to read your post. I just signed on today. Are you still able to use your hands or do you hold the pencil in your teeth? I am asking because I use a head mouse as i have no movement hardly left in my hands. It is from Origin instruments down in the US and our provincial ALS Society has loaned it to me and loaned software to use it .
I am from Calgary, Alberta, Canada. I was diagnosed only last September and the confirming diagnosed was in October and already i am down 55lbs to 115 and no use of hands and unable to walk. I can weight bear once someone has hauled me up. i can not stand on my own.
mostly i was wanting to say i hear you and provide info on the head mouse.
PATRICIA
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hi all, just thought i would continue with my story and thankyou to those that replied with info on the laser mouse. well when i got diagnosed i was 218 lbs. i was in great shape and took pride in my physical appearance. my muscles were always the one attribute that made me stand out. im currently 155 lbs. down 63 in 3 yrs. when i got diagnosed i knew that i had one more shot at the the things i loved to do, such as one more archery season, one more fishing season, one more vacation with my wife. i took full advantage of them opportunities. i enjoyed every minute of the things i use to take for granted. the one thing to remember is to remind yourself everyday to never give in to your disabilities. i think that is what has kept me from declining rapidly. the longer im around the better the chances of a medical finding that might help us all. as for the now that poor excuse for a president that we have is preventing the funding of stem cell research, yet spend billions in the taking of lives in iraq. sorry about the rant. well ive tried many of them miracle vitamin supplements, tested positive for lyme disease, and it was a waste of time and money, but i tried. what good is money if your dead. well i will continue my life withe als later....ray
hi ray
ray,
totally hear you about the frustrations over preventing stem cell research. it's terrible. my grandmother has parkinson's, my aunt has ALS... it would be wonderful to know people were making progress through stem cell research so that others won't have to deal with some of the great challenges they have. UGH! anyway, keep in touch and let us know how you're doing. my aunt went to a speech therapist a few days ago and they are going to get her some sort of mouth device that will help her speech. i am so happy about that. ok, got to get to work. VERY late. woops!
ray,
totally hear you about the frustrations over preventing stem cell research. it's terrible. my grandmother has parkinson's, my aunt has ALS... it would be wonderful to know people were making progress through stem cell research so that others won't have to deal with some of the great challenges they have. UGH! anyway, keep in touch and let us know how you're doing. my aunt went to a speech therapist a few days ago and they are going to get her some sort of mouth device that will help her speech. i am so happy about that. ok, got to get to work. VERY late. woops!
Beebe
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Hi Ray from Pa.
Hi there, Where did you get your diagnosed? We live in N.J. my son-in-law Jack was diagnosed at Jefferson Hospital in Phila., Pa. That was in April of 2006. He has been progressing too fast . They are going to Costa Rica where there are doing stem cell. The family got together the money for them to go. American doctors are doing the procedure there for ALS and many other diseases. Maybe there is Hope! They have had good results. It won't be for 2 weeks but I'll keep you updated. They have to stay for 7-10 days outpatient. The doctors here offer no encouragement. That's why we need our support group, where people care about each other. My Best to you, Beebe
Hi there, Where did you get your diagnosed? We live in N.J. my son-in-law Jack was diagnosed at Jefferson Hospital in Phila., Pa. That was in April of 2006. He has been progressing too fast . They are going to Costa Rica where there are doing stem cell. The family got together the money for them to go. American doctors are doing the procedure there for ALS and many other diseases. Maybe there is Hope! They have had good results. It won't be for 2 weeks but I'll keep you updated. They have to stay for 7-10 days outpatient. The doctors here offer no encouragement. That's why we need our support group, where people care about each other. My Best to you, Beebe
To Ray In Pa
Hi Ray I Am Fairly New To This Site Also. I Am So Glad I Found Others That Can Share Info With Me And Hopelfully I Can Also Help Someone. I Have Also Had Als For 4 Years. I Worked Up Until 2 Yrs. Ago And Like You I Worked Until I Could Not Physically Do It Any More. I Can Still Use My Hands Some, But It Is Hard To Type. I Am Losing My Voice Gradually, So A Speech Therapist Is Working With Me And I Have Recently Gotten A Device That Will Help Me Talk. Because I Have Problems With My Hands Also. I Have A Head Mouse I Have A Dot I Stick On The Tip Of My Nose. It Could Go Anywhere On The Head. I Move It Around To Hit The Area I Want To Speak. It Is A Laser Device. You Can Also Get Another Device That I Don't Have Yet But It Hooks Into The Dynavox 4 Equipment And Will Allow You To Use This Device To Type On Your Computer. I Know What It Is Like To Not Have Much Use Of The Hands. This Device Can Also Be Used To Take The Place Of A Remote Control For Your Tv. I Can Turn The Volume Up Or Down And Have Programmed Two Favorite Channels.
Best Wishes,
Lois
Hi Ray I Am Fairly New To This Site Also. I Am So Glad I Found Others That Can Share Info With Me And Hopelfully I Can Also Help Someone. I Have Also Had Als For 4 Years. I Worked Up Until 2 Yrs. Ago And Like You I Worked Until I Could Not Physically Do It Any More. I Can Still Use My Hands Some, But It Is Hard To Type. I Am Losing My Voice Gradually, So A Speech Therapist Is Working With Me And I Have Recently Gotten A Device That Will Help Me Talk. Because I Have Problems With My Hands Also. I Have A Head Mouse I Have A Dot I Stick On The Tip Of My Nose. It Could Go Anywhere On The Head. I Move It Around To Hit The Area I Want To Speak. It Is A Laser Device. You Can Also Get Another Device That I Don't Have Yet But It Hooks Into The Dynavox 4 Equipment And Will Allow You To Use This Device To Type On Your Computer. I Know What It Is Like To Not Have Much Use Of The Hands. This Device Can Also Be Used To Take The Place Of A Remote Control For Your Tv. I Can Turn The Volume Up Or Down And Have Programmed Two Favorite Channels.
Best Wishes,
Lois
LeoGreene
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I'm new too
I was only diagnosed this past week. Still trying to come to grips with it. I also plan to work as long as I can. I love my job. I'm a professional video and print journalist and would love to do a documentary. Say, Beebee. Where is that place in Costa Rica? Do you have a web link?
I was only diagnosed this past week. Still trying to come to grips with it. I also plan to work as long as I can. I love my job. I'm a professional video and print journalist and would love to do a documentary. Say, Beebee. Where is that place in Costa Rica? Do you have a web link?
Beebe
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Hi LeoGreene
Where do you live? I'm so sorry about your diagnosed. Do you have weakness or twitches? Jack was diagnosed in April of 2006 He had weakness in fingers hands arms now his walking is bad. He's fallen a few times. Progressing too fast. The doctor there said they are having good results with patients with ALS so we are hopeful. We have to be with this disease. My best to you , Beebe
Where do you live? I'm so sorry about your diagnosed. Do you have weakness or twitches? Jack was diagnosed in April of 2006 He had weakness in fingers hands arms now his walking is bad. He's fallen a few times. Progressing too fast. The doctor there said they are having good results with patients with ALS so we are hopeful. We have to be with this disease. My best to you , Beebe
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BWk
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Leo,
What kind of documentary were you thinking of doing ?What part of Ca.are you in? I used to live over there, I now live in So. New Mexico. Als is tough to deal with, oddly enough I find myself pretty calm now, I dislike it [als] not any less, but I guess I finally just got tired of being terrified all the time and letting the 'monster' win in my life.Barry
What kind of documentary were you thinking of doing ?What part of Ca.are you in? I used to live over there, I now live in So. New Mexico. Als is tough to deal with, oddly enough I find myself pretty calm now, I dislike it [als] not any less, but I guess I finally just got tired of being terrified all the time and letting the 'monster' win in my life.Barry
saras_daughter
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welcome welcome!
I hope that you are well connected with your ALS advisor there in your area, because they can be just a fountain of help when it comes to getting things to help with your typing, etc. needs. I know that in Alabama you can find out more at www.ALSAlabama.org
if theres anything I can do to help you there, just let me know!
(((hugs))))
and congrads on your time fighting this diease. Heads up...you are such an inspiring person!
I hope that you are well connected with your ALS advisor there in your area, because they can be just a fountain of help when it comes to getting things to help with your typing, etc. needs. I know that in Alabama you can find out more at www.ALSAlabama.org
if theres anything I can do to help you there, just let me know!
(((hugs))))
and congrads on your time fighting this diease. Heads up...you are such an inspiring person!
hi sarah's daughter, i live in the pitt., PA area and i would go to the als clinic for the first 2 yrs. of my diagnosed. it seemed like every time i would go the neurologist would try and push me into having a feeding tube put yet i would tell them my swallowing was fine and 2yrs later im still fine. the counseler i felt was trying to make me upset by bringing up my death and do i have a living will. i got fed up and stopped going opting to deal with things on my own with my wife. well hello to all my new friends out there...bye
Al
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I've said it many times. You have to do what is best for you. The counsellors and docs are trying to do the best they can with the training they have had. Sometimes even in an ALS Clinic it can seem that they are overbearing. You have to become informed on your own and make the decisions that you think are right for you. It sounds like that's what you've done so good for you. Welcome again Ray to our little group now almost 900 in total. AL.
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